Already have an account in the Map-HD Registry? Click here.
The HDNA aims to facilitate the best quality of life for every person in Australia affected by HD. The Mapping Working Group, formed in June 2020, has broad representation from across Australia. The group includes representatives from the HD state associations, the HD specialist clinics, and from those who are directly affected by HD. The aim of the Mapping Working Group is to guide and advise the HDNA Project Team in mapping HD across Australia. The Map-HD Registry is the first Australia-wide registry. The registry will show us which regions of the country need clinical care and support services for Huntington’s disease.
Why Map-HD in Australia?
We believe an Australian HD map will provide the essential foundation for:
- Recognising the needs and preferences of the HD community to ensure these needs are reflected in our clinical, social and financial supports.
- Building a network of skilled clinicians who are able to deliver treatments as they become available.
- Characterising the incidence and prevalence of people affected by HD across Australia. This will help inform the economic impact of HD on the healthcare system and the indirect impacts on employment.
One of the best ways to Map HD across Australia is to encourage as many people as possible to join the Map-HD Registry. If you would like to get involved, it’s easy!
Who may sign up to the Map-HD Registry?
Adults and children in Australia:
- Diagnosed with HD
- Undiagnosed but gene positive (have the expanded gene)
- Who have a family member with HD although they themselves are gene negative
- At risk for HD, e.g., children of a parent with HD or a sibling of a person with HD
- Not at risk for HD, e.g., spouse, partner, stepchild of a person with HD
- Who help to take care of a person with HD
Considering signing up to the Map-HD Registry?
Here is all the information you need to help you decide whether the Map-HD Registry is for you:
Please take the time to read the Participant Information and Consent Forms below. Different forms are available depending on who is to be registered in the Map-HD Registry and who will be providing consent. Please note that these documents are for review purposes only. Consent will need to be provided within the Map-HD Registry.
- For an Adult providing own consent, please read PICF Adult Self Consent
- For a Carer/Partner/Responsible Person consenting on behalf of someone they care for, please read PICF Carer / Partner / Responsible Person
Are you from Western Australia? If so, WA specific laws apply. Please contact us before proceeding (03) 9902 0081 or email@example.com
- For a Parent/Legal Guardian consenting on behalf of a child, please read PICF Parent / Legal Guardian
After reading the above and deciding to sign up to the Map-HD Registry, you will be required to create an account. You can do by following the ‘Register Here!’ link below. Once consent has been provided within the registry you will be able to continue to complete your profile by answering the questions.
Follow the link below to sign up. Please note that you will need to have your mobile phone handy.
What information is needed to complete your profile in the Map-HD Registry?
In preparation for completing your profile in the Map-HD Registry, here is a list of what you need:
- An Australian mobile phone number to enter during the account creation process. You will need to have the phone with you to receive a verification code.
- A username (this may be your email address or any other username of your choice).
- A password of your choice.
- If applicable, the names of HD specialist clinicians you have visited in the last two years (approximately).
- If applicable, your NDIS plan. You may provide details about the services which have been approved, the extra time you need for services, how long it took to receive the plan, how long it took before you started receiving the services in the plan and your overall satisfaction with the plan.
- If applicable, the Australian government-funded aged care services you receive (ongoing and short-term), how long it took for the services to be approved and whether the Regional Assessment Services (RAS) or Aged Care Assessment Team (ACAT) conducted the assessment.
The average time to complete a profile is 30 minutes.